A Textbook Case of Insane Medical Rules

     HOUSTON (CN) – Guardians of a mentally retarded man with cerebral palsy say Texas’ decision to “entirely eliminate the life-sustaining private-duty nursing care that [he] has received in his home simply because he turned 21 years old” is “medically unacceptable” and would create an “extreme risk of death.” Texas plans to cut the man off from services on Thursday.

     In their federal complaint, Virginia Johnson and Thomas Johnson say 22-year-old Richard Johnson’s fragile health requires “continuous skilled nursing care.”
     Besides cerebral palsy, Richard is legally blind and has “scoliosis, contractures, chronic constipation, seizure disorder, sleep apnea, chronic obstructive
     pulmonary disease (C.O.P.D.), compromised immune system, dysphagia (swallowing
     impairment), temperature dysregulation, dysphasia (severe speech impairment), bladder incontinence, bowel dysfunction, and seasonal allergies,” among other things, the Johnsons say.
They add: “As a result of these medical conditions, Richard requires continuous skilled nursing care. A skilled caretaker, among other things, must suction Richard’s secretions every 30-45 minutes to maintain the integrity of his airway; closely monitor his cardiac and respiratory status and oxygen saturation level; administer respiratory treatments several times a day using an Intermittent Percussive Ventilator; continuously monitor Richard’s neurological status for seizures; frequently reposition Richard to prevent skin breakdown; and administer his medications through a gastrostomy tube. Without constant attention to his many complex medical needs, Richard is at extreme risk of death.”
     The complaint states: “Until now, Richard has been able to receive the nursing services he requires to survive in his home because he is eligible for Medicaid-funded services. For years the Texas Health Steps Comprehensive Care Program (‘CCP’) and the Medically Dependent Children Program (‘MDCP’) have provided him with 135 hours of private-duty nursing services per week.
     “However, once individuals like Richard turn 21 they are no longer eligible for CCP and MDCP. Consequently, prior to Richard’s 21st birthday, he sought additional funding under a state-funded program, Rider 36, so that his medical needs could continue to be met in his home after he turned 21.
     “Rider 36 is a state-funded program under which individuals with significant disabilities whose service plans exceed the usual cost ceilings for long-term community care programs, such as the STAR+PLUS program in which Richard has attempted to enroll, can receive medically necessary services, including nursing, in community settings.”
     But the defendant Texas Department of Aging and Disability Services (DADS) denied Richard Rider 36 funding because “‘DADS clinical staff concluded [his] health and safety can be protected in an available living arrangement other than the STAR+PLUS program setting,'” according to the complaint. It adds: “This conclusion directly contradicts the opinion of Richard’s primary care physician that institutionalization is inappropriate for Richard and that a reduction in the amount of skilled care that Richard receives would be medically unacceptable and would create an imminent risk of Richard’s death.
     Defendants have agreed to extend Richard’s services until January 12, 2011, at
     which time Richard will be terminated from the Texas Medicaid programs that have provided him with the private-duty nursing services he requires to stay alive while living in his home.
     “Virginia Johnson’s home is the only place that Richard has lived since he was 14
     months old. According to his treating medical professionals, it is the only place where his
     complex care needs can be met. Despite this, Texas Medicaid plans to entirely eliminate the life-sustaining
     private-duty nursing care that Richard has received in his home simply because
     Richard turned twenty-one years old.”
     So the State of Texas plans to cut off Richard Johnson’s services after today “at which time (he) will be terminated from the Texas Medicaid programs that have provided him with the private-duty nursing services he requires to stay alive,” the Johnsons.
     The Johnsons say the Texas Department of Aging and Disability Services has not held a “hearing of any kind … with respect to its conclusion that Richard’s health and safety can be protected in a state facility.
     They add: “Rider 36 determinations … are decisive with respect to whether Medicaid funds will be made available, and Medicaid determinations are statutorily subject to fair hearing requirements.”
     The Johnsons say the Americans with Disabilities Act and the Rehabilitation Act prohibit “public entities” and “recipients of federal funds from discriminating against qualified persons with disabilities.”
     “Because the denial of funding for services effectively condemns Richard to a quick death” the Johnsons want the state to “provide Richard an administrative fair hearing to appeal the denial of Rider 36 funding, enjoin the denial of funding for nursing services pending the outcome of that fair hearing, continue the funding for Richard’s home care that is essential to his survival.”
     They also seek declaratory relief that the state’s denial of funding for Richard’s nursing services violates state and federal law.
     The Johnsons sued Chris Traylor, commissioner of the Texas Department of Aging and Disability Services, and Thomas Suehs, Texas Health and Human Services Commission’s executive director.
     The Johnsons are represented by Houston attorney Sean Jackson.

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